Neurological disorders are the leading causes of disability worldwide. On July 26, we celebrate the signing of the Americans with Disabilities Act (ADA) into law in 1990. The ADA is a human rights law that prohibits discrimination against people with disabilities. Its signing was a historic event that fundamentally changed the lives of many for the better. Designed to model the Civil Rights Act of 1964, the purpose of the ADA is to guarantee that individuals with disabilities have the same opportunities as everyone else, including education, employment, purchasing goods and services, and participating in state and local government programs. I’m proud of all that the ADA has achieved, and now is a time to consider what more we can do to ensure the inclusion of people with disabilities in neuroscience research careers and support research that benefits everyone.
Disability and neurological disorders are intertwined. Neurological disorders—including dementia, autism, Parkinson’s disease, cerebral palsy, brain and spinal cord injury, a myriad of neurodevelopmental disorders, epilepsy, motor neuron diseases, and many others—are the leading cause of disability. Among these, stroke remains a leading cause of serious long-term disability in the United States. On the other hand, people with disabilities, no matter what the cause, are at risk for poorer overall health and face various health-related disparities. Since its signing in 1990, the ADA has been strengthened to improve access to health care, but barriers to equity still exist, especially regarding communication, stigma, and accessibility.
Recently, the NINDS Office of Global Health and Health Disparities hosted the Health Disparities and Inequities in Neurological Disorders (HEADWAY) Workshop, with an overarching goal of identifying evidence-based interventions that are feasible and widely scalable. This workshop is informing a Health Equity Strategic Plan, which will guide our investments in research to eliminate health disparities and promote health equity in neurological disorders. Giving attention to factors that contribute to health, such as those related to disability and myriad other factors, is seen as an essential component for advancing research on health disparities.
For research to benefit everyone, including people with disabilities, studies need to include people with disabilities as participants, yet these and other groups remain underrepresented among participants in research. Strategies are needed to enhance the inclusion of people with disabilities in neuroscience research studies, by designing studies with community members and stakeholders that give attention to accessibility and barriers that may prevent enrollment.
At NINDS, achieving diversity in neuroscience means enhancing the inclusion of everyone, and especially those with disabilities and individuals who tend to be underrepresented in the biomedical sciences. The NINDS Office of Programs to Enhance Workforce Diversity (OPEN) has established several creative diversity training programs open to people with disabilities. NINDS also supports talented diverse researchers at the tenure-track faculty level through the new Diversity R01 for New and "At-Risk" Investigators and NINDS Diversity Faculty K01 program. Our series From Potential to Action: NINDS Awardees Navigate Diverse Paths to Success features several grantees whose candid stories demonstrate that persons with a disability bring a unique, valuable, lived experience to their research. These stories, as well as community-built resources such as Disabled in STEM, also show that community and allyship are powerful tools in nurturing the neuroscience workforce.
It’s important to recognize that anyone can become disabled at any time, and that disability can greatly impact researchers who are just starting their careers. Fortunately, NINDS offers supplemental funds to K-awardees and first-time research project grant awardees whose research is impacted by a critical life event, including emergent health issues and navigating a new disability. Made possible in part by the ADA, NINDS and NIH grantees can also request additional funds for accommodations, such as specialized equipment, assistive devices, and personnel such as readers, interpreters, or assistants.
Despite our inclusion efforts at NINDS and more broadly at NIH, people with disabilities remain underrepresented in the biomedical workforce. As summarized in a blog post by Marie A Bernard, M.D., a recent report by the National Science Foundation National Center for Science and Engineering Statistics found that of all graduates awarded doctoral degrees in the biological and biomedical sciences in 2019, 8.89% reported having one or more disabilities. To address this, the NIH Advisory Committee to the Director Working Group on Diversity Subgroup on Individuals with Disabilities is working on systematically identifying data, strategies, and experiences of individuals with disabilities in the scientific workforce. The hope is that their findings, along with other NIH-wide diversity efforts, will shine light on how to better support individuals with disabilities in the research community.
The NIH has also made great strides in supporting employees with disabilities. Each year, the NIH Office of Equity, Diversity, and Inclusion (EDI) recognizes employees who have made significant contributions towards the advancement of people with disabilities through the NIH Champions and Allies of Disability Award. In 2021, Maryann Sofranko, Associate Director for Management at NINDS, received this award for her leadership of the NIH Project SEARCH, a decade-long initiative that hires transition-age youth with intellectual disabilities into the mainstream workforce. There are also several disability resources, such as the NIH ABILITIES group, an employee resource group that was established to foster a welcoming, supportive, and respectful workplace that promotes success for all NIH staff, regardless of ability or disability. To celebrate the ADA, NIH will host a virtual lecture today entitled Reimagining Disability for the 21st Century: From Ableism to Innovation—we invite you to tune in if you can.
While the ADA guarantees the rights of people with disabilities to access health care, pursue research careers, and live in the community, it alone is not enough to guarantee the availability of the support they need, so there is more work to be done. Simple adjustments or acts of support for a colleague or friend with a disability go a long way. As the COVID-19 pandemic forced us to quickly pivot to virtual meetings, I am proud of our NINDS staff who have worked diligently to ensure accessibility options, including live captioning for meetings, and providing alternative text for images featured on our websites. In addition, consistent with the ADA, the NINDS website is designed to be accessible to all users. As outlined in our 2021-2026 NINDS Strategic Plan: Investing in the Future of Neuroscience, we will strive to make neuroscience welcoming and equitable for all. This plan also includes CORE Ideals centered on a Culture of Respect and Engagement: Inclusion, Diversity, Equity, Agency, and Leadership Support, as well as NINDS-wide town halls dedicated to conversations on disabilities.
To learn more about the history of the Americans with Disabilities Act, we encourage you to watch the video Commemorating 30 Years of the Americans with Disabilities Act. Disability rights are human rights, and we are grateful for laws like ADA that have made our society and the NIH more inclusive.